Table Of Content. European Surveillance of Congenital Anomalies (Phase 3)... 3 Summary... 4 Coordinator, Leader contact and partners...

Transcription

1 Table Of Content European Surveillance of Congenital Anomalies (Phase 3)... 3 Summary... 4 Coordinator, Leader contact and partners... 5 Registry of Congenital Anomalies... 5 CNR Institute of Clinical Physiology... 5 Consejeria de Salud Y Servicios Sanitarios... 5 University of Graz... 5 University of Padova... 5 University of Medical Sciences in Poznan... 5 Institut Européen des Genomutations... 5 Johannes Gutenbert Universitat Mainz Klinikum... 5 CAROBB... 5 Med Fak der Otto von Guericke Universitat... 5 Liverpool Women's Hospital... 5 Registro Campano Difetti Congeniti... 5 Southern Health Board... 5 University of Groningen... 5 CARIS, Singleton Hospital... 5 Basque Country... 5 Dublin EUROCAT Registry... 5 Ministry of Health of Cyprus... 5 National R&D Centre for Welfare & Health... 5 CEMC Auvergne... 5 Provinciaal Instituut voor Hygiene... 5 Congenital Malformation Register... 5 CRP Santé... 5 Northern Congenital Anomaly Survey... 5 University College Hospital... 5 Paris Registry of Congenital Anomalies... 5 Southampton University Hospitals NHS Trust... 5 London School of Hygiene & Tropical Medicine... 5 Universita Degli Studi Di Ferrara... 5 Corporacio Sanitaria Parc Tauli... 5 Hungarian Congenital Abnormality Registry... 5 Université Louis Pasteur... 5 Slovenian Medical Association... 5 University of Southern Denmark... 5 Department of Health Information... 5 Sicilian Registry of Congenital Malformations... 5 University of Leicester... 5 Medical Birth Registry of Norway... 5 The National Board of Health & Welfare... 5 Institut de Pathologie et de Genetique... 5 ECEME, Universitad Complutense... 5 National Institute of Health... 5 Page 1/13

2 Universitat Autonoma de Barcelona... 5 University of Dublin, Trinity College... 5 University of Glasgow... 5 Outputs Annexes Final report Original Full Information (Dec 2008) Page 2/13

3 European Surveillance of Congenital Anomalies (Phase 3) JA GPSD [705038] START DATE: 01/03/2004 END DATE: 01/09/2007 DURATION: 42 month(s) CURRENT STATUS: Finalised PROGRAMME TITLE: First Programme of Community action in the field of public health ( ) PROGRAMME PRIORITY: - CALL: Health Information (Hi 2003) TOPIC: Improving information and knowledge for the development of public health EC CONTRIBUTION: EUR KEYWORDS: PORTFOLIO: Major and chronic diseases, Population groups Page 3/13

4 SUMMARY General objectives To provide essential epidemiologic information on congenital anomalies in Europe. To co-ordinate the establishment of new registries throughout Europe collecting comparable, standardised data. To co-ordinate the detection and response to clusters and early warning of teratogenic exposures. To evaluate the effectiveness of primary prevention, in particular folic acid supplementation. To assess the impact of developments in prenatal screening. To provide an information and resource centre and ready collaborative research network to address the causes and prevention of congenital anomalies and the treatment, care and outcome of affected. Strategic relevance and contribution to the public health programme - Methods and means 1. Network of 51 population based registries of congenital anomaly in 28 countries of Europe. 2. Common dataset with common coding as specified in EUROCAT Guide 1.2, to be revised to Guide 1.3. Database with >250,000 cases of congenital anomaly in livebirths, stillbirths and terminations of pregnancy since 1980 for analysis. 3. EUROCAT Data Management Programme (EDMP) used by member registries for data input/import, validation, annual transmission to Central Registry. Compatible software for statistical monitoring in member registries. 4. Survey of policies and practices with regard to periconceptional folic acid supplementation. 5. Collaborative working through Registry Leader Meetings, Symposia, workshops, EUROCAT Communications, members only area of website. 6. Steering Committee of elected members. 4 Working Groups and 3 Committees. Expected outcomes period - Page 4/13

5 COORDINATOR, LEADER CONTACT AND PARTNERS COORDINATOR University of Ulster (University of Ulster) Cromore Road BT52 ISA Corelaine/CO Londonderry United Kingdom Project leader contact Name: Norton Barbara Phone: (0) PARTNERS Registry of Congenital Anomalies Country: France CNR Institute of Clinical Physiology Country: Italy Consejeria de Salud Y Servicios Sanitarios Country: Spain University of Graz Page 5/13

6 Country: Austria University of Padova Country: Italy University of Medical Sciences in Poznan Country: Poland Institut Européen des Genomutations Country: France Johannes Gutenbert Universitat Mainz Klinikum Country: Germany CAROBB Med Fak der Otto von Guericke Universitat Page 6/13

7 Country: Germany Liverpool Women's Hospital Registro Campano Difetti Congeniti Country: Italy Southern Health Board Country: Ireland University of Groningen Country: Netherlands CARIS, Singleton Hospital Basque Country Page 7/13

8 Country: Spain Dublin EUROCAT Registry Country: Ireland Ministry of Health of Cyprus Country: Cyprus National R&D Centre for Welfare & Health Country: Finland CEMC Auvergne Country: France Provinciaal Instituut voor Hygiene Country: Belgium Congenital Malformation Register Page 8/13

9 CRP Santé Country: Luxembourg Northern Congenital Anomaly Survey University College Hospital Country: Ireland Paris Registry of Congenital Anomalies Country: France Southampton University Hospitals NHS Trust London School of Hygiene & Tropical Medicine Page 9/13

10 Universita Degli Studi Di Ferrara Country: Italy Corporacio Sanitaria Parc Tauli Country: Spain Hungarian Congenital Abnormality Registry Country: Hungary Université Louis Pasteur Country: France Slovenian Medical Association Country: Slovenia University of Southern Denmark Page 10/13

11 Country: Denmark Department of Health Information Country: Malta Sicilian Registry of Congenital Malformations Country: Italy University of Leicester Medical Birth Registry of Norway Country: Norway The National Board of Health & Welfare Country: Sweden Institut de Pathologie et de Genetique Page 11/13

12 Country: Belgium ECEME, Universitad Complutense Country: Spain National Institute of Health Country: Portugal Universitat Autonoma de Barcelona Country: Spain University of Dublin, Trinity College Country: Ireland University of Glasgow Page 12/13

13 Powered by TCPDF ( OUTPUTS Annexes University of Ulster European Surveillance of Congenital Anomalies (Phase 3) (EUROCAT 3) Published on: 01/03/ Final report University of Ulster European Surveillance of Congenital Anomalies (Phase 3) (EUROCAT 3) Published on: 01/03/ Original Full Information (Dec 2008) University of Ulster European Surveillance of Congenital Anomalies (Phase 3) (EUROCAT 3) Published on: 01/03/ Page 13/13